3 Quick Tips for Surviving the Holidays with an Autistic Child

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1.) Take what everyone has told you that you HAVE to do over the holidays, and throw all of that out the window.

2.) Do not compare your holidays to the highlight reel photos you will see of other neuro-typical families on Facebook. We are not them – and never will be.

3.) Do whatever works best for you and your family. Anything that is fun and done out of love is more than good enough. Feel free to create your own traditions and do whatever brings you all joy!

Happy Holidays from Dancing with Autism!

Interacting with Babies – a 1st!

 

12241652_1808603266033359_5035554037936497528_nWow….. Sage sent me these pics today – Lila trying to interact with the babies. Unless you’ve been to our house, there’s no way to really know how truly incredible this is.

Sage said she acted like she was talking to them, then she would pull on Brynlee’s toy and smile when Brynlee giggled!

Guided by Janet, Bill and I have worked with Lila literally 24/7 with floor-time/play therapy since she was 15 months old – SO many people (including Lila!) have put in so much work with Lila’s early intervention, and these new things are a direct result. I literally can’t even fully process all of the new things going on every single day. So grateful!

Curly Fries – a 1st!

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One of the components to Lila’s autism I don’t talk about much on here is her sensory processing disorder – which affects her eating… a lot. She is not a “picky eater”, she is actually considered a “problem feeder”, meaning she has less than 5 “foods” that she will accept.

I know it’s not healthy or organic, but guys – it’s solid food!!! Last night she ATE some curly fries. She has played with them before while I was eating, but last night was the very first time she actually ate them. Bill and I are always so grateful for any and all progress – so exciting!

Felt Christmas Tree from Janet!

Janet made Lila her own felt Christmas tree with both flat and 3D felt ornaments (on her day off no less). You can store the ornaments inside the presents at the bottom when they’re not in use!

Janet was Lila’s Early Intervention therapist – and now she’s family. She’s just an all-around beautiful human being, we’re so blessed!

Working with Autism Hippie: Session #1 – Meltdowns

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So I’ve been speaking with Autism Hippie…. because she’s intelligent, funny, and has a boat load of autism experience. She’s trained in several different therapeutic teaching strategies, including RDI – we’ve been doing a lot of RDI, floor-time/play therapy at our house since Lila was 15 months old, and it has worked wonders so far.

For this first installment, we focused on how to handle meltdowns.

Autism Hippie has two wonderful blogs about meltdowns, located here:

https://autismhippie.wordpress.com/2014/03/12/meltdowns/

AND here:

https://autismhippie.wordpress.com/2014/03/14/behavioral-meltdowns/

Autism Hippie’s advice included the following:

  • Set up a predictable framework for meltdowns – always act the exact same way, every single time.
  • Breathe slowly and stay calm, keep saying the same things over and over (you can even use a sing song voice – which we did).
  • STAY CALM. I just said it but it warrants repeating, this is incredibly important. The more worked up SHE gets, the calmer you get.
  • If she attacks you, just gently take her hands in yours, and direct them downward.
  • Rub her back, stay connected if at all possible – if you need to and can, redirect her to something soothing, helping to create a sensory pattern of calm.
  • Finally, set her up to HAVE a meltdown – in the house and outside.

Here’s what ended up happening. Fortunately (or unfortunately), we ended up with the perfect scenario in which to try this out. Last Saturday we attempted a trip to iHop. She’s been successful in prior trips to iHop – they have a couple of things which help tremendously: booths and free wifi. However once we got there, there was a wait. Standing room only – Lila quickly became overwhelmed and lost it. We moved outside on a bench to try and calm her, and then she somehow managed to clock me in the face. She was in meltdown mode at this point, so we decided to just head home.

Once we got home, she calmed a bit. Then she asked for some new play doh. I gave her some, and she wanted more. I gave her a couple more pieces (she had two handfuls at this point), but she still wanted more – and when I told her no, she started throwing a tantrum. I told her that was all the new play doh she could have right then, that we should go play with it – and she was livid.

It quickly escalated into a full-blown meltdown. Bill was there with me and I started using the techniques above from Autism Hippie. She tried to hit me in the face and pull my hair a few times, each time I just gently took her hands in mine and directed them downward. The more amped up she got, the calmer I got (I really had to focus on that part to make it happen – I’m a high anxiety person by nature). When she was dialed up to a 10, I was at a 1. I kept rubbing her back and saying “everything’s OK, you’re a big girl, and you can do this” in a sing-songy rhythmic pattern.

The meltdown lasted for 20-30 minutes (my sense of time tends to get a bit skewed during a meltdown), but by the end she had grabbed her blanket and was cozied up on the floor with some milk and a fidget toy. She was able to self-soothe and calm down after about 5 minutes of that.  Then we were good to go for the remainder of the day.

Thanks to Autism Hippie, I feel much more confident having a set plan for dealing with her meltdowns. If you would like to speak with her as well, you’re in luck – email her at: autismhippie@gmail.com , and she will place you on the webinar e-mail list for the next round of webinars. Do it – I highly recommend speaking with her, she has so much knowledge and a obviously a ton of experience!

An American Girl Doll from GoTeamKate

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Lila got a gift last weekend in the mail…

A ridiculously adorable American Girl Doll – complete with pink glasses! 💖 I’ve honestly never seen her take this kind of interest in any doll or stuffed toy… ever. And she was a big fan of the shipping box as well 😉

So as much as I felt we shouldn’t accept this beautiful, thoughtful, and ridiculously expensive gift – we did, because Lila’s not letting her out of her sight ❤ Thank you so much to GoTeamKate for this incredible gift – sending so much love, light, and humble gratitude your way!

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The day we got her, Lila grabbed my hand at one point and put it on her doll’s shoe. Evidently since the doll was inside, she should not have her shoes on! So we did the “one foot, two foot” and took her shoes off.

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When Lila brought me her picture card for “slide”, I brought the slide out into the living room. I helped her slide down it, then I helped her doll slide down as well. Lila thought that was pretty funny, she kept grabbing my hand and putting it on the doll to help the doll slide down again.

Sometimes Lila even goes and gets the doll so she can hang out in the recliner with her 💖

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It’s honestly been one of the roughest weeks I can remember – so grateful to Shanell, Alex, Grace, and Kate for such an amazing gift for our Lila.

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Boomer Sooner (Our Monkey) 2005-2015

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We saw him not long after he was born in the spring of 2005 – Bill’s cousin Matt and his wife Kara’s dog Diamond had an unexpected litter of puppies with a neighborhood shepherd. They were all adorable – Bill and I hadn’t even got a place of our own at that point, but I wanted one of those puppies. I had my sights set on a little brown one I named “Bear”. After a few weeks, Bill finally relented that we could have a puppy – but if we were going to have one of these puppies he said – it had to be the best-looking one. He chose Boomer.

He was a country dog at heart – growing up in rural Indiana. He loved to run around in the wide open spaces, follow us around on 4-wheelers through the forest, bound around in the snow like a deer, and swim in the local creeks. He never took to a leash, they terrified him.(short aside: Bill and I took him to a hotel once, and Bill had to carry him into the hotel, in the elevator, and into our room). In an unfamiliar setting he could appear to be a bit of a big chicken.

However in actuality, nothing could be farther than the truth. He was such a sweet boy – he exuded a quiet calm and strength at all times, something I didn’t notice all that much until it was gone. Throughout the years whenever Bill had to be out of town, Boomer knew it – and took his job as our protector very seriously. He would sleep in the living room by the front door, and listen for anything out of the ordinary. He rarely barked – and if he did, we knew we needed to pay attention.

He lived to please us (especially his Daddy), and one of my favorite things he picked up was that if it had snowed or rained, we didn’t want dirt tracked around the house – so we would make him stop right inside the door so we could wipe off his paws with a rag. As he got a bit older he would hold up one paw at a time so we could wipe it clean, he even lifted his back legs straight back so we could clean them as well. He was always kind, loving, and utterly charming as well.

He loved car rides, and going places with us. He loved the laser pointer with a passion. He was literally the best dog in the entire world. When Lila came along, she would have toys all over the floor. Toys I know that Boomer desperately wanted to get ahold of. Yet he knew he wasn’t supposed to, so he didn’t – always such a good boy.

When he started having hip/joint problems 6 months ago, it kind of took us by surprise. He had always been a very healthy dog. The deterioration happened very quickly – and in August we had to make the choice of whether to just put him to sleep, or to amputate his leg and hold our breath. We chose the latter, we felt we owed him every chance possible to make it.

And make it he did – after the surgery the pain was gone, and – aside from the loss of a back leg – he was back to his old happy self.  Dr. Emmert said it was the most difficult leg amputation he’s ever done, and he thought once he got into the surgery that Boomer might have cancer – he tried to get as much of it as he could to buy us time. And so we ended up having 3 months to love him, baby him, and pray that the cancer was gone.

Life doesn’t always turn out the way you hope or expect. Boomer’s stump started growing, his appetite slowed, and he started having GI problems. We gave him daily pain medication and held off as long as we could, while still affording him some dignity at the end. In his last full day it was beautiful outside, and he got to play with his old girlfriend Mally, make a new friend (Tyson), eat some rib meat, chew on rib bones, and spend time with Keith, Bill, Lila, and me.

I won’t detail Boomer’s final day and burial – that was between Boomer and us. However, I will tell you that Lila loves to watch videos on my phone, and for whatever reason – last night she chose to watch videos of Boomer running around outside from the previous day. It simultaneously warmed my heart, and broke it all at the same time.

I woke up so many times last night to check on him, only to realize he wasn’t there. Everywhere we look we think of him. This has already left such a huge hole in our family –Bill and I are just taking this one day at a time. I am so glad we got to be his Mommy and Daddy, we loved him more than I can ever possibly explain. We miss and love you more than you will ever know, Monkey – and I promise we will see you on the other side.

Working with Lila’s School

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I heard horror stories of going into the public school system. Tales of IEP nightmares, teachers who won’t listen or cooperate, refusal of certain services, and even mistreatment of some special needs children. Well…we must have just flat lucked out – have I mentioned how much we LOVE the school Lila is in for her special needs pre-K class?

It’s funny – there are things she will do at school but not at home – and even more things she will do at home that she won’t do at school… yet. Her speech path was so surprised when I started sending her videos of us working with Lila on her speech at home. She hasn’t done any of that at school yet. So during parent/teacher conferences we were able to sit down with her and give her some ideas.

She was SO open to sharing ideas! “Use balloons, bubbles – say “ready, set”, then she will say “go!”. Throw the balloon up in the air and say “yay!”- she will be so excited that someone else knows her games!” The speech path then said that Lila won’t use the picture cards they have there. I looked and we immediately saw why…. velco. She has some sort of a sensory issue with velcro. So the next day Bill and I sent her a magnetic whiteboard, some magnetic strip, and some balloons to use with Lila.

Then they had an issue this morning with transition to and from speech therapy. Lila melted down and then had a rough remainder of the day. I suggested they try a “First-Then” countdown like we use at home in regard to difficult transitions, and I sent her a detailed description of what works for her at home. Her teacher e-mailed me back within 10 min and said they would have First-Then transition boards ready for her to use on Wednesday – and she said they really appreciate me (I promise you it’s not near as much as we appreciate them!!!).

I honestly can’t even tell you how amazing this has been, we are so blessed. We love Lila’s new teacher, speech path, and occupational therapist up at the school. Sage is doing such a great job with her at in-home daycare as always, then there’s Bill and me of course – and Janet – who is now family (and also still my Executive Advisor on all things Lila).

Short Side Note: Janet and I are just starting work on adding a NEW therapy technique to the mix – will keep you updated on that little venture as well 😉

I LOVE it that we can all work so hard in conjunction with each other to make things better for Lila – we all make such a great team!

Lila Update 10-30-15

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Holy smokes, Lila is doing new things so often that it’s almost overwhelming when I sit down to try and type it all out! How wonderful is that problem?!? I love it!

We had our first meeting with her special needs pre-K teacher (and her SLP) this week. I can’t even tell you how wonderful it was to hear someone outside our little circle to say how very smart Lila is – I mean, everyone says she’s pretty – but they don’t see the Lila we see at home, they don’t see how incredibly funny and intelligent she is, and some people seem to think that because she is non-verbal, she isn’t intelligent. Such a relief that her teacher can see what we see in her! Love having new members on board here at Team Lila.

Lila has started to play with a soft baby doll (pretends to feed and then kiss her) at school, and she after months of not wanting anything to do with the flag and swatting it away, here is our designated flag holder during circle time this week. My heart may literally explode – all of these pictures make me so emotional. I know how far she’s come – I know what a big deal these seemingly small things are. It’s just incredible. Random shout out to Janet here – she is such a huge part of the reason that Lila has made so much progress.

Lila also held a stuffed toy a few different times (for short periods of time) lately – more new things for her!

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Bill started a new game with Lila to help her work on the words she has obtained so far through speech. We all do a playful back and forth with words she is gaining confidence with: “Oh No!,”, “Uh Oh”, “Yay”, “Dada/Daddy”, “Again”, “Mama”, and “Ready, Set, then she says “Gooo!”. That playful way of working on therapy with her has always worked very well for all of us, and apparently speech is no exception.

We’ve had a Halloween-themed game this week as well. I gave her a plastic pumpkin and put some of her toys in it. Bill added counting to it and she loves it – adorable video up on the Facebook page if you haven’t had a chance to see it!

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She also found an Easter basket that her Memaw got for her a couple of years ago. She love, love, loves the paper Easter grass!

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We use a lot of “First-Then” countdowns with Lila during transitions. A new development which I think is amazing is this: If she is tentative and has a lot of anxiety about the transition, she has me do the countdown per usual. However – IF she is comfortable with the transition we’re doing, she will go ahead and put down whatever the previous item is and come over to me for the next activity. Pretty incredible!

Speaking of incredible – we’ve been doing grocery store trips on the weekend, and we’ve had a few meltdown-free trips in a row. She’s come such a very long way – this week we even went just the two of us, and I had to return something (deviation to typical store routine) – and she handled it like a champ.

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I gave her a Dora tent from last Christmas this week – she really looked that box over and decided she wanted what was in it! First time I’ve ever seen that – Christmas this year is going to be so much fun.

And now we have Play Doh – she used to have a lot of tactile defensiveness with it, but now she is totally in love with Play Doh. She requests it all the time, then she brings me some play doh tools Janet brought over, the extruders and shape cutters are her favorite. For the shape cutters she likes to sit in my lap and I say “ready, set”, then we say “go” and I help her push the shape cutter down into the play dough. Then she takes her shape and always looks so pleased with herself. Love, love, love all of this new-found play!

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I think that’s it for the moment, although I’m sure I’ve forgotten tons of things. The Little Lady does something new every day now, the rest of us are just trying to keep up!